Endometriosis: A Husband’s Perspective

For the third time this week, I’m on my own helping the kids with their homework, driving them to and from sports activities, feeding them dinner, cleaning up the kitchen, and putting them to bed. My wife is upstairs in bed, in pain that is so excruciating that the only way she can cope by the end of the day is to load up on painkillers and sleeping pills and go to bed as early as possible. While ferrying the kids to their activities, I spend the drive worrying about how my wife is holding up, particularly emotionally. This is not an unusual occurrence for her. And for me, worrying about my wife is part of the life of being an endo husband.

My wife has had endometriosis since she was 13, but it only became debilitating when she was in her 30s. In the last decade or so, she has tried every type of medical and alternative treatment available, searching for solutions to her pain and many other related symptoms and secondary complications. Every day, we talk about how she’s doing that day. She rates her various organs on a pain scale of one to ten. “My bladder is a 7 this morning, unfortunately, but my gastrointestinal system is only a 3, and my uterus and chest pain are barely noticeable, so today isn’t too bad so far.” After the morning pain report, we often discuss medication strategy and any other health-related topics, trying to come up with the best plan for that day for my wife to minimize pain and get the most out of her day. This type of conversation is also part of being an endo husband.

Endometriosis is a particularly complex disease because it can affect almost any organ in the body. Every patient experiences it in her own unique, but usually excruciating, way. An implication of this fact is that, ideally, a team of specialists (especially surgeons) is needed to provide the best care possible for this disease, led by a highly trained laparoscopic excision surgeon/gynecologist. Unfortunately, this type of care is rarely available. More typically, women are simply prescribed one type of hormone therapy or another, and sent home to cope as well as they can. Their pain is often explained away by doctors as being either hypochondriacal, or drug-seeking. Considering how common and debilitating this disease is, the quality of care for most women is truly appalling. As a husband who has watched his wife suffer terribly for years, I have had a close-up, but second-hand, education in what it is like to have a chronic disease that the medical system doesn’t care much about.

Years ago, my wife and I would have discussions about how she should handle conversations with friends and colleagues about her disease. As a naturally introverted person, it went against my wife’s instincts to talk about her body and symptoms in a frank way, especially since her period or ovulations were inherently involved in her symptoms, not to mention organs such as bladder and bowels. My position was always the same: “Just tell them the truth. Don’t hide anything or gloss over anything. Why should you? You haven’t done anything wrong!” Eventually, my wife got used to having these types of conversations. It makes some people uncomfortable, but that’s their problem, not hers.

As an endo husband, I have gradually come to feel a sense of disgust and outrage at how ignored this disease, and the women who suffer from it, are. Research is virtually non-existent compared to other major diseases. Coordinated care is rare. Misconceptions and misinformation, even among gynecologists, is rampant. There is no standard of care, no evidence-based treatment guideline. Women are left to figure it out largely on their own.

Incredibly, my wife is in many ways one of the luckier victims of this disease. She is a Ph.D. scientist, so she can research the scientific and clinical literature while trying to determine the best care possible. She has a strong network of family and friends (including many women with endo). She was able to keep a half-time job until recently. And we have three beautiful children to help keep her motivated to fight this disease tooth and nail, even when it’s at its most discouraging and hopeless.

When my wife asked me if I would be interested in writing a brief article about endo from the perspective of a support person, I quickly agreed. I welcomed the opportunity to make the same plea to all women with endo that I made years ago to my wife. Please, tell anyone who asks how you are doing the whole truth. Don’t hide anything or gloss over anything. After all these years of watching my wife struggle and suffer, there’s one thing I’ve learned the hard way: The only way this disease will stop being invisible and ignored is if all women affected by it (and their partners) speak up together, and demand change. This is what endometriosis awareness month is all about. And this is my fervent hope as an endo husband.

I must have been lucky! Started spotting in my late 40s or 50s after having 4 children by age 25. Got married at 17 years old. As I got older someone mentioned that I needed to see a gyn dr. I was lucky to get an appointment with a gyn that keeps up with new procedures and was responsible for bringing lazer surgery to our area. Very Smart Dr. After the exam he had found a fibroid tumor and ordered a ultra sound which said my tumor was the size of an eight week pregnancy. Ue went to do surgery and found out I had endometriosis and had to open me up and get the help of 3 other Drs. to help do lazer surgery to get rid of the endo off of my intestines that was almost eating into them and would have died . He also told me it had eat up my nerve endings which I did not have the pain of cancer which I should have had.m

I have Endo and the pain is only right before and during my period as of now. It is dibilitating, if I were not on three different pain medications I would be hospitalized the pain is so severe. It feels like someone has a belt around my bladder and utuerus and they keep tightening it over and over. Currently I take Tramadol (50mg), Ibuprofen (800mg), and Pyridium (200mg) through out the day when I’m on my period or just before. The Pyridium helps with the bladder pain and is an absolute life saver. Not many people are aware that this medication can help with endo pain because it is typically described to people experiencing bladder pain because of a UTI. I can’t recommend this medication combo enough. It doesn’t take the pain away completely, but makes it manageable.

I am 19years old and currently with my girlfriend for 10 Months, like my parents would probably it’s young love but to me I think this girl is the one you know we always talk about growing old together. We are currently 4 hours apart as I have just started university so yeah it’s hard but I love her so much. She has been having all these symptoms for years and having seen a gyna a few months the ago, had treatment for cervical erosion which obviously has not worked she has suffered more pain now post 4 weeks from the treatment. I am seeing her tomorrow for the first time since leaving for uni and well her mum plays it off as her over reacting which doesn’t help when I’m so far away at university with her ringing me so much. What can we do who do we see? She went back to the nurse to have a check up and she has said she needs an ultrasound scan I’ve told my girlfriend to explain the pain but it’s so hard to for her and I’m pretty certain she has end her grandma had it too and so did her great grandma and can see by the pain she gets into. I just hope we can get it sorted now when she’s 18 especially in terms of having children in the future. She feels alone and I feel I can’t help her and it’s killing mr sorry this is so long but any help/advice would be alot of help please email me Sujpatel14@gmail.com thank you.

Names Jeff and im an endo husband. After our first child, 8 doctors, second child, countless ER trips, and doctors laughing at my wife because she said sex was painful…i was near losing it and postal! Also i found out that the hospital we were going to was Catholic based and legally doesnt diagnose endo…all because the catholic church doesnt mess with female reproductive organs or prescribe contraception. After 3 years of getting the runaround we finally figured this out. They have prescribed a huge amount of meds(50+) but nothing at all for pain! She is allergic to most over the counter meds now. Honestly we have talked about leaving the country to a place with lighter drug laws so we can have a life. Political Agendas have created a certain difficulty is getting anything for my love that works. People wonder what makes honest men do dishonest things. Being ignored, misdiagnosed, improper treatment, watching her cry as she walks out of every appointment over and over for years and years. Our lives are a shadow of what they were. And there is absolutely no going. Accepting this had been difficult for lack of a proper word. There arent words for the anger and pain i feel for the woman i love. The single most difficult of trials either of us will ever face. Good luck to is all.

Thanks for being such a devoted endo husband! With all of the lack of support from those around us, having people in our life who understand is so important. You are right that a Catholic hospital is not likely to be helpful. I would suggest joining Nancy’s Nook Endometriosis group on Facebook, and there you will find a lot of resources about how to find a doctor who can help your wife. https://www.facebook.com/groups/418136991574617/.

Wish more men, whether it be a husband, friend, boyfriend, could understand what a woman with Endo goes through on a daily basis.
This is a great article. And truly hope the word on endo and what a horrible condition it is 4 women and men as well could be spread.

Jeremy thank you for sharing with such honesty and support for an illness that affects so many women the world over. As women we love connecting and hanging out with our friends and talking about life and yet we have somehow found it really difficult to talk openly about our own bodies on a deeper level. Why is this so? When we begin to speak openly and honestly about how we feel and what maybe going on for us it opens up an intimate line of conversation for all women to share their experiences too.
This honesty can build a strong foundation for further changes for women and women’s health from all sides. What you have shared here Jeremy is brilliant and so needed. Endometriosis needs to be discussed more openly. So many women have the illness today and many doctors are still baffled by it, how can this be?

I am a mother of a 32 year old daughter who has endo she too discovered the disease after a miscarriage but continued to be having labor pains. The doctors went in thinking she had a tubal pregnancy only to discover she was ate up with endo. Four surgeries later and two kids ( which the second was a surprise since she had tried for over two years to get pregnant and couldn’t ) she just underwent her 4th surgery and it is three weeks now and her pain is just as severe as it was before surgery. I have watched her struggle with this and suck it up trying not to be a sissy. I hurt for her every day yet there is nothing I can do for her. She is trying to run a business a household a husband and two kids. Thank God she has a wonderful husband who understands her pain and helps her with the everything and understands her need to just rest exhausted from dealing with the pain. Her doctor says a hysterectomy doesn’t always cure the problem and she isn’t ready to stop having a family so doesn’t consider that an option. I don’t know if this is herititary but I have two sisters that had to have a hysterectomy due to this disease but then they had other issues to deal with because of that choice. Lesser of the two evils.
Thank you so much for sharing this and I agree more people and doctors should be aware of this and more research should be done for there are so many women out there that don’t even know that they have it unless a doctor will exam them for it. So women don’t suffer insist they exam you to rule this disease out before passing it off as just cramps. I cried when my daughters doctor told me she had had this for years because I just thought she was trying to get out of going to school or doing chores as I never even had bad cramps so I couldn’t image hers being that bad. So please take your daughter, wife, girlfriend or just friend serious when she tries to tell you her pain and support her while she goes through this. The constant pain also causes depression and that too is scuffed aside as suck it up. This is real folks please pass this own.

Thank you so much to the husband and wife who have endured their endometriosis story sot that this article may be written.
I showed this article to my boyfriend who wants to get married and I think it really helped us. Thank you and I prayed for your wife, and sending healing good vibes her way and to all the endometriosis families out there.
Thanks again,

I can certainly identify with this story. I was only 26 years old when I was diagnosed. I had never heard of this disease until then. I had emergency surgery and I went through horrifying treatments that only paid off for the medical staff. I will say I changed my diet and found a doctor in Atlanta, GA that has changed my life!! No more pain!! I cried because I remember this pain. I couldn’t walk I hurt so bad. You are such an understanding husband and she is very lucky to have you for support. Thanks for putting this out there!!!

Hi,
My name is Cobbie and thanks for sharing your story. I am supporting my partner with disease and would like to know the name of the physician you saw in Atlanta. We are exploring many options together and seeking out other health care specialists is one of them. Email me at cobbieliving@yahoo.com

Hi, I live in atlanta and curious to know the name of your doctor you found in Atlanta, my girlfriend suffers with endo and would like to explore other options/doctors. if you can please email me at anibalzamayoa@yahoo.com. thank you!

Hello, my name is Giovanni. My fiancée was diagnosed with this disease about a year ago, has already had 2 surgeries, and is still suffering from immense pain. If you could share the name of that physician in Atlanta, it would be greatly appreciated! We’re beginning to look into other specialists out of state. Please email me at giovannicalderon873@yahoo.com, thank you!

Endometriosis is not an enjoyable disease. I am so tired of people telling me I need to stop taking pain killers, or I need to start excercising more to get rid of the pain and that eventually I will get there, as if the disease will cure it self. I am so tired of my friends thinking that I am fine and that I’m being unhealthy because I need to rest all the time or my co workers thinking I’m lazy because I look like I don’t do any work, when I am in my office crippling in pain and needing to vomit but can’t.and because it happens all the time they assume it’s normal for me and they can ignore it. I am sick of people assuming magnesium will help, or spinach or broccoli. But I feel like giving up before I’ve started because of the countless number of woman who have trusted their doctors with their lives and they have sent them home telling them to change their diet, or have a baby. And then when you tell your friends and family what the doctor said on how to cure it it becomes a joke. And that when you ask your pharmacist for the pain killers they give you a dirty look when you tell them why you need it and again they suggest magnesium as if its going to kill the disease? please tell that to my endometriosis that is ripping at my insides at the moment. I’m sure it would have a lot to say. I have even tried going up for prayer and an astonished look of amazement as to why I am asking for prayer for cramps. I had a rough surgery resulting in an asthma attack 3 months ago and am still bleeding from that surgery. They put a iud in me saying will help the bleeding stop but it didnt. It’s amazing you support your wife, I just hope and pray for support in my life and for other woman in my situation who don’t have support from anyone around them.

I supposed it would be easier to kill us all off. The ones who a malformed, maligned, broken from the inside out.
The ones that look normal, but are not.
The ones who imagine railroad ties going through their kneecaps, to keep the screaming from coming outloud. The searing paing that was riddling through my abdomen earlier. Only recently subsided.
Two nights ago, it felt as if a bunch of hot spicy tomatoes, decided to have a dance I. My intestines. I was lucky for that fiesta, I only woke once and it seemed a lot of the partners had retired for the evening. I was double lucky because I had pot to smoke that might so, even though I could feel that they were in fact trying to hurt me, they were not. I could feel their pulsating and throbbing and movement, but no real pain. Just uncomfortable.
They next day was similar, except I ran out of pot. The the tears flooded from eyes. Even though I got reprimanded for making too much noise with the moans and groans and he had to leave the room.
I cannot help it. I try to be good and quiet. I tried not to whimace too much, I try to not make an assface whe it feels there is a stiletto being dug into various parts of my body.
Right now I’m eating at Ativan like candy, because it’s all I have.
Not good for me or my liver.
But it seems to help.

Thanks for your story. It makes me feel better knowing I’m not the only one who’s went through this kind of pain with only painkillers to ‘help’ (since they don’t really get rid of all of the pain). I read some of the comments also hoping there was something that someone would mention, but didn’t. Has your wife tried a diet of NOT having gluten, dairy, caffeine, red meat and alcohol? If I don’t stay on that diet I start going through the pain I’ve been in for the last few days which is almost unbearable with meds. Otherwise, I have no pain at all and after a while I can eat/drink something “bad” and it doesn’t bother me (as long as I keep with the diet. I think everyone should try it. I, personally, can still have red meat and I haven’t tried any alcohol except beer, which has gluten, to see if that’s also a no-no, but I do have to be gluten-, lactose- and caffeine-free to not have any pain. It does suck because I love food and love to eat, but it’s worth the wonderful feeling of no pain. I hope everyone who has endo at least tries this to see if it helps them. It worked for me within 24 hrs the first time I tried it. I just can’t help straying a bit sometimes, lol.

Yes I too have a wife with crippling Endo and I recognise everything you say. I was particularly taken with your thoughts on how the disease is tackled . ie , it isn’t … at all . the collective and inherent lack of basic understand and the flippant /incompetence of the so called health industry is bordering on criminal.

Made me shed a tear also. People don’t understand what it is like to suffer this shitty disease unless you have it or you have a partner that has it. Personally I found that my family couldn’t understand the pain and issues let alone friends.
I was diagnosed with stage 3 at the age of 23 but I know I have it for years before hand just never had a gynaecologist able to diagnose it. I am now 32, was never able to have children, been through every hormone medication possible, had 5 laparoscopy surgeries and at the stage that they can not.do anything more for me so within the next two years I will be having a hysterectomy. Not only does it physically drain you but the emotional effects of this disease are so very charming also.

Great article and thank you for your support! I was diagnosed just over 2 years ago (at 27). I have already tried numerous birth controls, had 2 surgeries, and am now coming out of an induced menopause (lupron). Things are not looking so great already.
My fiance is my biggest supporter. I could not do this without him. I am very lucky to have a guy that is so caring.
Thank you for a great article and speaking out.

Well said indeed. I am also an “endo” husband who has watched my wife of 18yrs go through trials and tribs that would hobble anyone who wasn’t the daughter of a US Navy officer that still hits .500 in slow pitch softball at 77. In other words she was taught that you just deal with life and press on, from an early age. She had symptoms for 20+ years before a hysterectomy (after our miracle baby, Phoebe, now 10 thankfully)revealed the cause of all that pain and silent suffering that is “every woman’s lot”. Luckily she too found, through her inimitable tenacity, an excisionist that had her feeling strangely better as soon as the anesthesia wore off after her 8hr surgery. Yes, 8hrs. Because that’s how long it takes to excise stage 4 endo. It just can’t be done in the 1 or 2hrs that only some insurance plans will pay for. Criminal if you ask me. And yes, I agree, we as husbands and they as patients have to be more vocal. I have said on too many occasions that what is handed out as patient care by too many providers, and med-schools, borders on malpractice. I could go on but suffice to say she/we would most likely not have been limited to one biological child (we adopted a boy, now 8) if she had been diagnosed any sooner. Summing up, count me in as not being a silent partner anymore. There are just too women, men and whole families that this disease has negatively impacted.

Well said. I just wrote a very similar article for the University Newspaper where i work, but it was from the perspective of a patient. Reading your article I could feel your wife’s pain and both or your frustrations as I have had many of the same expriences. Being an endo husband surely can’t be easy; it sounds like your wife has a lot of much needed support from you, which is awesome! I don’t many people ever think about the affect pain has on the family, I mean, most can’t see its effect on the patient nevertheless the family. I pary that the medical community gets off their asses and start taking endometriosis more seriously. After all the failed treatments, incl. a hysterectomy, I was suffering miserably. I was on the verge of losing my job, and a Nurse Practitioner from a Pain Mgmt center told me there was nothing she could do for me because I was simply constipated and that I would have to go on disability! Are you kidding me?! This is the type of healthcare us women are getting for our pain! (I won’t even go into the healthcare we receive for the endo as you already know). I am currently on a Fentanyl patch which helps for the chronic pain and also a short acting opioid for breakthrough pain (and an antidepressant) which for me was a Godsend as I know pain meds don’t help everyone, of course now I have to spend everyday worrying about when my meds will be taken away because of some paranoid physician or new laws regarding opioids, or that they will stop working. I hope your wife finds some relief. I loved your article. Thanks for writing it.